Families on a Mission


Many families that I know divide up their responsibilities among members in the house. It may not be distributed evenly but each person usually has their role to play. For EB families, it is no different and that can mean not only house duties but care for the loved one diagnosed with EB and promoting EB awareness.


There are several ways that family members both immediate family as well as extended family can support the EB community within their own circles and during their daily interactions. It can be anything from hosting fundraisers or EB awareness events in their neighborhoods to finding unique ways to donate to organizations focused on supporting EB families and research. For example, those who frequently shop online can seek out nonprofit matching promotions such as Amazon’s Smile program which enables the user to choose what registered nonprofit on the site they want to benefit from their shopping dollars upon login. Other vendors including Gorjana Jewelry and NuSkin enable shoppers to purchase merchandise and see dollars donated directly to a specific EB organization.


Older siblings in an EB family can educate other children and teens through conversations or school awareness events about epidermolysis bullosa to help cultivate an informed and supportive environment. Extended family members such as aunts and uncles, grandparents or cousins may be able to lend a hand to support parent caregivers by providing backup care and opportunities for stress relief, something critical to any caregiver.


If you are part of an EB family, what role do you play? And consider this: is there something more you can do to support others outside of your family and within the EB community? Please comment here and share your own thoughts on the various roles people connected to or part of an EB family can play. We’d love to hear from you.

Holiday Shopping for EB

The holiday season is here, and we can’t believe how quickly it seemed to arrive. But we didn’t want to let the season sneak by without sharing with the rest of the community some shopping links we’ve learned about that invite consumers to tackle their gift list while benefiting EB families at the same time.



The following links are provided as a courtesy to the EB Resource community for informational purposes only. None of these links featured here represent any kind of content or product endorsement or warranty by EB Resource.


  • For those planning to prepare and mail out cards for the holidays, consider an innovative option that combines celebrity, creativity and a good cause. Tiny Prints offers a line of Celebrity Cards, featuring cards designed by such notable personalities as Jennifer Aniston, Eva Longoria and Zoe Saldana, with proceeds from each sale benefiting the Epidermolysis Bullosa Medical Research Foundation (EBMRF). So the annual tradition of sending out holiday greetings to friends and family members can support EB research at the same time!
  • If you were planning to buy a new Kindle this holiday season, consider purchasing it at Amazon.com. By clicking on this specific link, Amazon.com will donate a portion of proceeds from the sale to DebRA of America.
  • And here’s another innovative musically tinged way to support EB. Planning on buying a friend or family member an MP3 player for a gift? Download the song “Butterfly Child” by Rob Duskey & Friends at Amazon.com or iTunes onto their new player, and each download supports the artists’ fundraising for EB research.
  • Looking to buy some beautiful bling for someone special? EBMRF has a link to Satya Jewelry at its online shop, and DebRA features a beautiful butterfly bracelet as well as a butterfly pin at its website’s merchandise page, with each purchase benefiting their respective referring organizations.
  • EBMRF has also partnered with the NuSkin products skin care line, so next time you’re looking for an invigorating skin cream, consider helping EB at the same time with purchases of three of their products (Firewalker, IceDancer and Glacial Marine Mud).


These are just a few ideas we have found. Do you know of some others? If so, please share them here with the rest of the community.